pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Dear People,
I thought you might like to know how the state groups are doing.
For those who don't already know, I set up yahoo groups for all but 3 states (someone else has done 3), hoping people could use them for state organizing as well as for support and information. The groups are moderated and I have been gradually supplying each one with various files, research, educational materials, etc. Most of the bigger groups have moderators in the state they are in.
So far CaliforniaLyme, my first group, is way out ahead with 474 members. I'm constantly amazed by the quality and quantity of helpful posts there.
NY and PA have >40 members; in the >20 category: AZ, CT, MA, NJ, TN, NC; 5-19 members: CO, DE, FL, GA, IL, MD, IN, MN, MO, OH, VA, WI; <5:AL, AK, AR, HI, ID, IO, KS, KY, LA, MI, MT, NB, NV, OK, UT, WV.
Although I have created URLs for the following states, they are not accepting members and I am working with leaders of preexisting groups in ME, MI, NH, OR, RI, NM, TX, VT, WA.
There is a place for state-based groups, especially in the realm of political action and organizing. I hope you will consider joining your state group as well as continuing your membership here.
It would be a good thing if everyone on this board joined a group, if one exists for their states, so as to have a place to handle statewide issues. If we don't get better organized, we are going to continue to limp along playing defense constantly. If you come to lymenet for help, you should consider the need for joint efforts. One person alone is powerless, a bunch of people together can accomplish things.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Lou, exactly my sentiments.
There is so much we can do at a state level. Acting at the state level requires a certain degree of knowledge, familiarity and trust among residents of that state. I encourage all members here to support their state groups even if they come here for their main support. They can take info from here to their state groups.
I don't know how people are finding out about the state groups, but something draws people to them. People want to see if there are resources closer to home. Often there aren't, but at least the group can offer some support and information about resources close by.
To me after 20 years in this "business" (diagnosed in '87) it is clear that the states need to get together, and the internet provides a really convenient way to do it. Phyllis
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
just use YOUR state's name instead of "Maryland" in the address. works fine.
Phyllis-
Two questions. Is the information etc. being channelled through this Yahoo state group infrastructure being coordinated with lyme groups-online and off- that already exist in states?
And, sorry if you already covered this, but is this is a CALDA project, or LDA's/other natl groups?
thanks- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
Washington State continues to provide state-wide support via Yahoo Online Support Group, as well as support group meetings at various locations throughout the state.
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Dilly, You asked: Is the information etc. being channelled through this Yahoo state group infrastructure being coordinated with lyme groups-online and off- that already exist in states?
Answer: The announcements and info come from a variety of sources. All the SG leaders have been invited to join the online groups. Some have joined, some have not.
If there were pre-existing online state groups, in some cases the yahoo group "points" to it; in other cases the yahoo group has not been developed at all. If the existing state group's vision is incompatible with what I want to do with the groups, there may end up being more than one state group.
You asked: is this is a CALDA project, or LDA's/other natl groups?
Answer: It is basically MY project. It was my idea. I set up CaliforniaLyme a couple of years ago because existing state groups were local groups that actually had meetings, and a lot of people were being left out. CA is a huge state! CaliforniaLyme worked so well that I decided to set up groups for other states I had friends in, for them to use, and then it just grew because I thought all states should have one.
I wanted a "matched set" so they are all set up the same way. They are LDA-friendly, because I believe our best chance at success is if we join together and coordinate and cooperate, and working with LDA and all the affiliates is the best way to do that.
I hope this clarifies.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
thanks for your time, Phyllis, this info does clarify.
next step- am registering with CALDA's site to see what you have tucked away there.
I'm in the process of pulling together online resources for Maryland TBD patients/family/caregivers & political advocates, and don't want to reinvent the wheel or overlook any other organizing efforts here in MD.
Thanks again-
Julie Director, Baltimore Lyme Advocacy Network
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic